Once again it is always something

14 years 1 month ago #30230 by Cynthia
Replied by Cynthia on topic Once again it is always something
Sorry this has taken me so long to post. They did the procedure on Wednesday at noon and I got back to the room around three and fell asleep. I slept until six in the morning on Thursday with only getting up long enough to get a drink, do flushes and take medication. I got up and headed home from Boston and it was a long haul as I was so very tired. Got home ate and fell asleep again until seven this morning. I would assume as I have slept 26 out of the last 44 hours that I may have been exhausted. Today I am not bright eyed and bushy tailed but feeling more like myself.

The good news is that they were able to get through the blockage in the ureter. I will not be able to turn the valve so it empties into my pouch until my urine runs clear there is still some blood coming through. It was interesting as when I got there they told me that they had talked to the Urologist and were going to do what they called a rosebud coming out of my stoma so that the urine could empty into a external pouch. They seemed to forget that I have a navel stoma and that because of that the external appliance would not work well. I was also alarmed about what would happen to my Indiana if it was abandoned for weeks on end. After much discussion it was decided to go through the kidney and ureter and to allow it to drain into my pouch. I will let you know how all of that works once I am able to throw the switch.

Another interesting note is that I would have told you that there was no pain involved with having a neph tube installed this time I am having some post pain I can only imagine that is due to them doing it twice so close together.

Thank you all so much for all of your caring. I am going to lock this thread in a little bit as it is getting so long and start a new one. Now that I know they could open up the ureter the search is on for a solution that does not involve major surgery. As of now I am slated for surgery the 20th of March.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society
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14 years 1 month ago #30195 by Rockyiss
Replied by Rockyiss on topic Once again it is always something
Wow Cynthia a person gets busy shoveling snow, gets back on line and finds out all kinds of things are happining to you. Is you head spinning really hard trying to figure it all out ?

You are most definitly in my prayers and I hope you find the answers you need. Rocky
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14 years 1 month ago #30169 by Leigh
Replied by Leigh on topic Once again it is always something
Welcome home!!

Here's to you building strength and zapping blockages ...and protecting your kidney.

It certainly is worth a try before re-considering RC once more.

Thinking of you...

xxxleigh

Leigh, 39
Dx July 2007
TURBT July 2007
RC/Neobladder ,Studer Pouch, September 2007
Erasmus Centrum Rotterdam
TNM Classification: pT4 N2 Mo
4 cycles aduvant chemo Gemzar & Cisplatinum
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14 years 1 month ago #30167 by Julie
Replied by Julie on topic Once again it is always something
Thanks for the update, Cynthia. I read the forum after the chat tonight so I didn't know why you were in Boston. I certainly hope there is a way to keep the ureter open for you. I'll be thinking of you. Hugs, Julie

Volunteer Coordinator
ABLSC
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14 years 1 month ago #30166 by wsilberstein
Replied by wsilberstein on topic Once again it is always something
Cynthia. Best of luck.
Cancer - the gift that keeps on giving. You hope your troubles are over if you're cancer-free, but our bodies don't always react that way to our treatments.

-Warren
TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant 5/2014
Pediatrician
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14 years 1 month ago #30164 by Patricia
Replied by Patricia on topic Once again it is always something
Cynthia....what surgery? Are you still considering the ileal conduit? OK stupid question....the ureter still goes to the conduit.....its the same ureter thats blocked. Why would this be better? I hope you've contacted Hopkins...i know they've had experience with this.
Just concerned.
xxoo Pat
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